jcawork

Please let me know your experience w/ Topotecan including pre-meds, allergic issues, side effects and results. Thanks, Jen

Please let me know your experience w/ Topotecan, how the infusions went (any allergic reactions) , your pre meds, side effects and results. Thanks, Jen

I am concerned that brain mets is worse than having any other mets. Does WBR really get rid of them? Does WBR really help them not come back? Jen

Addie, As usual your are the voice of reason. I have been doing some of the normal stuff (gardening a bit) as I dont want the family to know just how sick I am, but enjoying I am not. Feel unsteady on my feet though. Hoping that will come again (joy). DDD is degenerative disk disease which I knew I had, but had not lit up on a pet before. Unable to confirm if its a met. The only good news is the MRI of the abdomen is considered the gold standard over CT or PET and they have confirmed not a met. Thanks for the encouragement. I wish I lived in your head instead of mine. Love, Jen

I just have not been able to post. I am have been too upset and sick.Thank-you for the emails. Brain mets were confirmed (2) and I just finished WBR (20). I am a dishrag from it. New node in other lung not sure what it is. New stuff in right lung is now considered fibrosis. Pet showed met to liver, Abd. MRI said it isnt a met. Pet shows hot spot on T-10 of spine, not confirmed could be DDD. I have had this bizarre left flank pan for a month now that they cant figure out. Didnt have ovaries removed last week as I was too sick from WBR and got my first horrific period in a year the week I was scheduled. Not sure if I will have surgery. Ovaries are not confirmed yet as mets as its quite unusual, but possible and they are huge. I have also had a lot of weird neuroendocrine symptoms since a week before I got the bad news ie, diareah, dizzy,feel weak, no appetite, tachy heart etc... Start Topo tommorow or next week. Making decision tonight. Usually, you get a break for a week or two before you start chemo after WBR. I can start right away, but I am so blown I am not sure what I should do. My radiation Doc allowed me to have tx's on the weekends too to get me to chemo quicker. Mentally, I am a mess. I am very depressed and can't help but think about the poor prognosis. I almost cant handle reading the board because of the bad news and the way it possibly illustrates my own future. I just cant seem to pull out of the hole I am in. Chardonnay and fudgesickles arent even working this time. My plan is to just put one foot in front of the other and try. I am so upset that my family must go through this, again. My husband is also ill w/ Hep. C and is now being worked up at NIH. I hang onto the few extensive's who are still surviving and can only hope. Wish more extensives would post. Thanks, Jen

I just have not been able to post. I am have been too upset and sick.Thank-you for the emails. Brain mets were confirmed (2) and I just finished WBR (20). I am a dishrag from it. New node in other lung not sure what it is. New stuff in right lung is now considered fibrosis. Pet showed met to liver, Abd. MRI said it isnt a met. Pet shows hot spot on T-10 of spine, not confirmed could be DDD. I have had this bizarre left flank pan for a month now that they cant figure out. Didnt have ovaries removed last week as I was too sick from WBR and got my first horrific period in a year the week I was scheduled. Not sure if I will have surgery. Ovaries are not confirmed yet as mets as its quite unusual, but possible and they are huge. I have also had a lot of weird neuroendocrine symptoms since a week before I got the bad news ie, diareah, dizzy,feel weak, no appetite, tachy heart etc... Start Topo tommorow or next week. Making decision tonight. Usually, you get a break for a week or two before you start chemo after WBR. I can start right away, but I am so blown I am not sure what I should do. My radiation Doc allowed me to have tx's on the weekends too to get me to chemo quicker. Mentally, I am a mess. I am very depressed and can't help but think about the poor prognosis. I almost cant handle reading the board because of the bad news and the way it possibly illustrates my own future. I just cant seem to pull out of the hole I am in. Chardonnay and fudgesickles arent even working this time. My plan is to just put one foot in front of the other and try. I am so upset that my family must go through this, again. My husband is also ill w/ Hep. C and is now being worked up at NIH. I hang onto the few extensive's who are still surviving and can only hope. Wish more extensives would post. Thanks, Jen

Have any of you experienced neuroendocrine symptoms w/ you sclc? Mine have been prior to dx and I am getting some again; tachycardia, flushing, fevers, spiking BP's, anxious, low sodium levels, dizzy. muscle weakness and facial skin hyper-pigmintation. Thanks, Jen

Yup, me too. My first dose of Cis they turned yellow. It was yucky. But then they grew out and are incredible. Have never been this strong my whole life. Toenails too, to the point where I have had ingrown nails a couple times because they are so strong and fast growing. Jen

Thanks for all of the care and concern. Sorry I have not been writing back. Too tired and not much to say. I am 10 days into WBR, they are doing me on the weekends too so I can start chemo sooner than later. Scheduled to have my ovaries out next Friday, but not sure if I should bother. It wont change the tx so why do it? Still depressed and have this horrific left flank pain that no one seems to know what it is or what to do. They say unrelated. Thanks again for the posts. Love, Jen

Congrats! You have been through hell and back. Love, Jen

I have been having severe left flank pain for a couple weeks. Its very bad at night lying down, better during the day when I am upright. From time to time I feel a spasm in my side that hurts so much my eyes water. They say no mets are in this area.From recenet CT and MRI they say kidney okay, no stone etc........ Any ideas? Thanks, Jen

I have been having severe left flank pain for a couple weeks. Its very bad at night lying down, better during the day when I am upright. From time to time I feel a spasm in my side that hurts so much my eyes water. They say no mets are in this area.From recenet CT and MRI they say kidney okay, no stone etc........ Any ideas? Thanks, Jen

Now they have found mets to the brain, lungs, liver, spine and they suspect ovaries. Will have ovaries out next Friday. 6 days into WBR. Dismal prognosis by my Docs and I am so depressed I can hardly deal. Chemo will start in 2 weeks w/ WBR is over, Topetecan. They wont do them together. I can't believe this is happening. I havnt been posting because I just dont have the steam to pretend to be okay w/ I am not. Jen

Thanks so much for the posts. It means a great deal. I am ok.MRi confirmed 2 brain mets, PERT results not in yet but preliminary call is ovaries, other lung and possibly 1 disc are lit up. 3 WBR done. Ovaries come out soon. I as told I will actually be put in some text book if they are sclc as its so rare. Arnt I the lucky girl? Onco agreed to Topo and VP-16 pills as my next line of chemo to start after wbr. I think thats too long to wait but they dont like wbr and chemo together I hear. Scared, miserable, mad, sad, disappointed and more upset at the strange "your gonna be dead" vibes I am feeling from med staff. Onco nurses crying and hugging me etc..... All med. staff have been so GD negative. No real hope offered. All different med staff, all top notch. It has made me ill. The reality is this is bad and the prognosis worst. I also cant imagine having the steam to do it all again, w/o a lot of hope, for chronic care seeing no end to the tx in sight. I just cant stand it. Thanks again for the posts. Thank-you for being w/ me all year through this miserable GD journey. I can't imagine having done it w/o this board. Jen

Thanks so much for the posts. It means a great deal. I am ok. 3 WBR done. Ovaries come out soon. I as told I will actually be put in some text book if they are sclc as its so rare. Arnt I the lucky girl? Onco agreed to Topo and VP-16 pills as my next line of chemo to start after wbr. I think thats too long to wait but they dont like wbr and chemo together I hear. Scared, miserable, mad,sad, disappointed and more upset at the strange "your gonna be dead" vibes I am feeling from med staff. Onco nurses crying and hugging me etc..... All med. staff have been so GD negative. No real hope offered. All different med staff, all top notch. It has made me ill. The reality is this is bad and the prognosis worst. I also cant imagine having the steram to do it all again, w/o a lot of hope, for chronic care seeing no end to the tx in sight. I just cant stand it. Thanks again for the posts. Thank-you for being w/ me all year through this miserable GD journey. I can't imagine having done it w/o this board. Jen

He needs a brain MRI asap in addition to the Ct scan. A PET wouldnt hurt either. Jen

As you can imagine, I am terrified that I am now extensive w/ 2 brain mets. Can these be dealt w/ 100%, can we survive after this has occured? Your experience? Thanks, Jen

Thanks for any feedback you can give me. Jen

Side effects how is it working? Thanks, Jen

Thanks for any thing you can share. Jen

How did this work for you and side effects? Thanks, Jen

Concerned, I have never had it because I have such a bad reaction to CT contrast, but have to have it tommarow anyway due to met. Have you ever had a raction to this contrast. Thanks, Jen

I am so upset I can hardly type. I am suicidal and feel hopeless. I can't even stand being in my skin. WBR & Cyber knife, pelvic rad and Tarveca planned.Repeat MRI of my head tommarow. My onco doesn't want to bother w/ IV chemo, pretty much said why bother. I am unsure if I can handle doing more tx, for why? Jen

I am so upset I can hardly type. I am suicidal and feel hopeless. I can't even stand being in my skin. WBR & Cyber knife, pelvic rad and Tarveca planned.Repeat MRI of my head tommarow. My onco doesn't want to bother w/ IV chemo, pretty much said why bother. I am unsure if I can handle doing more tx, for why? Jen

Yes I caught that mistake too. There were a couple of them, but I was still gld to see the exposure for lc. Jen